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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease?  Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes
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mcnabbmcnow

Could I Have Celiac Disease?

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For nearly five years, I have suffered from headaches, lightheadedness, constipation and gas (particularily on the left side of my stomach), belching and bloating, fatigue, and a general achiness pretty much all the time. I've been to neurologists, ear nose and throat doctors, gastrologists, chiropractors, allergist, massage therapists...etc...to some of the best in the country. I can't seem to stay focused on anything and feel bad for my wife and son coping with my problems.

One of the massage therapists mentioned that I could have celiac disease. Do you think with those symptoms it is possible? I am a 32 year old male in Pennsylvania. Anyhow, my massage therapist mentioned this to me, and assuming that I can still eat eggs, meat, veggies, and fruit, this diet seems more doable. I went to the health food store and bought some gluten free products. My questions are this (I haven't had any official tests to see if I have this but suspect it somewhat)

1. If in fact I did have Celiac disease, how long would it take for me to feel a difference if I was on a gluten free diet?

2. If in a 3 month period I cheated once...does that set you all the way back?

Any advice would be appreciated.

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I would advise you simply to get tested now, before you start the diet. If you are on a gluten-free diet for awhile, testing will not be accurate. Though you can get many different tests done, including biopsies, the least invasive is a blood panel. If you ask your doctor, you can get bloodwork done, which will tell you--this is better because if you just try the diet, it could take only a week, but it might take over a year to feel better from the diet--you just don't know, so if you don't get tested, you might, in a year, wonder if it might just take another month to feel better or if it's something else.

You cannot cheat. Cheating will set you back a great deal. If you've been gluten-free for a year and you accidentally eat gluten, it won't set you back all the way, but it could take weeks or over a month for your intestines to heal. You simply shouldn't do it, because cheating once every three months will continually set you back, making the diet less if at all effective. Additionally, untreated celiac (and if you cheat and aren't trying to be 100% gluten-free, it's untreated) can, in the long term, lead to future complications such as osteoporosis, diabetes, cancer, arthritis, thyroid disorders, malnutrition, anemia, and a multitude of serious problems. It's simply not worth it.

Finally, it's likely that you have celiac. You have the most common symptom, fatigue, in addition to other common symptoms: bloating, gas, belching...migraines can be linked to celiac. Also, 1 in 133 people have celiac, it affects 1% of the population, and yet, is untreated in 97% of the cases, usually because people aren't aware they have it and doctors don't test.

-celiac3270

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celiac3270. Thanks! Maybe because I haven't had the symptoms as long as some people, I am not in awful condition...but I am definitely frustrated. Where would I go near Philadelphia to get tested for this, and how complicated is the testing process....I have had colonoscopies and endoscopies and UPPER GI's in the past and found nothing...other than that I have functional dyspepsia. They define that as an irritation in the inner lining of the stomach...but really what it means is this. They acknowledge I have a stomach problem but do not know what it is or what is causing it.

It's not that I intend to cheat on the diet...but I also think it is inevitable at some point that you slip up and eat something you thought had no wheat in it.

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You sound a lot like I did a year ago although you don't sound like you are in as bad of shape as I was. I was also on the verge of Type II diabetes. I never got tested but from all that I have learned about this disease I am quite confident it is what I have. I can pretty much eat whatever I want as long as it doesn't contain gluten. I only eat meat, fruits and veggies. Corn and wild rice doesn't seem to bother me. I don't eat processed food anymore. I started to feel better about a week after going gluten-free although it was a good two months before I could say I felt healthy. For the first time in 36 years I was able to exercise regularly and find that is critical for me. Every now and then you are going to get nailed with an accidental hit of gluten. I am healthy enough now where it doesn't slow me down too much. I can usually feel it within a few minutes of ingestion and can stop before I eat too much. You've come to the right place, this is a great group.

Ianm

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Ian, thanks so much! The inability to exercise is something that is killing me, because I formerly was very athletic, playing tennis in college, and playing in basketball and baseball leagues growing up. I still play church softball. Recently I go to a chiropractor/massage therapist, and I feel better afterwards. However, if I come home and go on the elliptical machine for 7 or 8 minutes, I wake up the next day and I am aching all over...and it is almost like the massage therapy did no good. I basically cannot do any sports due to pulsing headaches and fatigue and achiness. I want to be able to exercise but for those reasons and because I feel nautious, I can't. My body reacts terribly to anything other than church softball, which can barely be called exercise.

I'm not as bad as you but it is perhaps because both my in laws live near me and basically I have a lot of stuff done for me....to make it short, I am financially stable, work at a low pressure job, and really have what many would feel is a nice life...other than I feel like crud all the time. It is tough on my wife who has to deal with my complaints and whining.....I don't even mention how bad I am feeling to her anymore because I figure she is sick of it by now!

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I can't do any real strenuous exercise. I do a lot of walking and bike riding. Also some weight training, not body building, to keep muscle tone. Working on a six pack but at 37 I'm not so sure that will happen but I can still try. :lol: Running is out because my knees can't seem to hold up too well. I was never able to do much of anything before going gluten-free so what I'm doing now is quite athletic for me.

ianm

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Oh, I see :) -- that's a better mentality--yes, we all make mistakes at some point or get contaminated at a restaurant. Provided that you're not constantly getting contaminated or making mistakes, you should have no long term problems from getting contaminated rarely. Don't be as concerned if you make mistakes in the beginning--those are nearly inevitable.

I know--it's really frustrating. Blood work, though least invasive, is the most likely to find it if you have celiac. Endoscopies can miss celiac, since the intestinal damage could be patchy or only in certain areas.

Keep us posted :)

-celiac3270

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Just found out something about antibodies and how often you need to make mistakes to be at risk for problems:

It takes 4-6 weeks for gluten antibodies to go down (that means, you can test a week or two into a gluten-free diet, but not long after. It also means that if you're making one mistake each month, you're at serious risk for the problems of untreated celiac: osteoporosis, cancer, etc. Just thought it would be interesting to share--

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